- singergram
- Sex: F
- Data Quality: 0 stars
- ALS: 1 yr
- Wheelchair
- Bulbar: mild
- Arms: moderate
- Chest: mild
- Legs: severe
- singergram
- Female, 78 years
- FL, United States
- Primary Condition
- ALS
- First symptom
- Jul 2008
- Diagnosis
- Jun 2009
- Deceased
- Oct 24, 2009
About singergram
Unfortunately, Singergram passed away on 10/24/09 after only 14 months from the very first signs of any problems and only 3 months after her diagnosis. I am a 78 year old widow who became affected by ALS last year and was originally diagnosed with CIDP (chronic inflammatory demylenating polyneuropathy). After 2 stays in hospital with treatments of IVIG and plasmaphoresis...neither of which did any good at all.... I was sent ot Shands Hospital at the University of Florida where Dr. Triggs diagnosed the ALS. The ALS symptoms seem to fit much better than the CIDP symptoms.
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More About singergram
Until last December I was working out at the gym 6 hours a week and been active all my life, I had belonged to several women's service organizations and had sung with the Sweet Adelines. The inactivity I am now experiencing is not what I had in mind for the "Golden Years". The speed of this disease is most distressing. My PT is talking about getting me a Hoyer Lift to make transferring somewhat easier.The swelling in my feet makes it impossible to wear any shoes at any time. Just gave away about 20 pairs of shoes. So far no problems with speech, breathing or swallowing. Thank God for singing and yoga!! I
I have 4 surviviing children. My older daughter died of melanoma 12 years ago and my 2 surviving daughters live in Floridda and Michigan. My 2 sons live in Texas and Bonaire in the Carribbean. My Florda daughter is my part time care giver. She lives in the Keys ...about a 5 hour drive from me ...but comes up as often as possible. Since she works full time and is the mother of 4 it isn't always possible for her to drop everything and run up here so I have an almost full time care giver here.
I have a fabulous support group with friends, neighbors and family. I am truly blessed in that regard. And so far I have had no pain from any of the symptoms so am blessed with that aspect as well.